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Genetic Testing: Is There a “Duty to Warn” At-Risk Family Members?

By Shelly Simana

Genetic information is quite distinguishable from much medical information due its familial nature and its unique ability to predict future health. The fact that genetic testing supplies comprehensive information about the genetic make-up of patients and their family members underlies the ethical and legal challenges faced by physicians and patients when deciding whether to disclose genetic information to family members. Failure to disclose information may “lead to harm, particularly when knowledge could result in avoidance, treatment, or prevention of a genetic condition or in significant changes to reproductive choices or lifestyle.” Due to the potential harm, one may ask herself if there is a legal “duty to warn” family members about the presence of defective genes, and if so, upon whom should it be imposed.

Some people may be reluctant to impose a duty to warn family members. One possible argument for their position could be that such a warning is contrary to family members’ “right not to know.” Another argument could be that the warning may inflict some fear. A third argument could be that following the warning, undesirable reactions may ensue (for instance, family members may avoid developing relationships with other people because of the fear that their children will carry a defective gene). Such arguments, however, are insufficient for avoiding imposition of the duty to warn. First, depriving family members the discretion regarding “whether to know” is wrong. Second, the presence of a defective gene does not testify as to inevitable eruption of a disease. And thus, after the warning, the family members can still decide between undergoing genetic testing to verify that they carry the gene and not undergoing testing, ensuring that they continue “not to know.” Third, advances in assisted reproductive technologies provide options preventing transmission of defective genes and automatically assuming that people will perform undesirable reactions may be unwarranted.

So after we came to the conclusion that there is a legal duty to warn family members, another question that needs to be addressed is upon whom should the duty to warn be imposed? If family members are not warned regarding a potentially transmittable disease, there are two possible “injurers:” the patient and the physician. In addition, following the holding in Pate v. Threlkel, a duty of care arises whenever a human endeavor creates a generalized and foreseeable risk of harming others. By depriving knowledge from family members, both the patient and the physician create “a generalized and foreseeable risk,” and thus have a duty of care. Yet, recognizing a duty of care is not enough. As it was held in Safer v. Estate of Pack, such duty should require to convey the warning to family member as well.

Injurer 1the patient: One possible consequence of imposing the duty to warn on the patient is the deterrence of genetic testing. Moreover, imposition of such duty ignores the fact that there are various reasons why patients could make an informed decision not to warn family members. Notwithstanding the difficulties accompanying the duty to warn, I believe that priority should be given to the life and health of family members. It may be argued that the duty to warn in the case of genetic testing is similar to the duty to warn in the case of contagious diseases. There is no doubt that a clear difference exists between negligent or malicious infection of a contagious disease and refraining from warning. However, as it was determined in Safer, in terms of foreseeability, there is no essential difference between the genetic threat and the menace of infection, contagion or physical harm. Moreover, the public interest in warning is identical in both cases as it may save lives or improve the quality of life.

Injurer 2—the physician: According to Safer, a duty to warn family members may be imposed on physicians even in the absence of privity. But it is of course no that simple. On the one hand, physicians must abide by the duty of professional confidentiality towards their patients. Yet, on the other hand, physicians possess information likely to improve the health and in certain cases even save the life of family members. One could think of three different approaches to the relationship between the duty to preserve professional confidentiality and the duty to warn. The first approach, which was adopted in Pate, treats preservation of professional confidentiality as an absolute value. The genetic information is private and the physician has a duty not to convey it to family members. A second possible approach recognizes the importance of preserving professional confidentiality but also the moral necessity of warning family members. According to this approach, the patient will be warned prior to testing that the results may possibly be sent to family members. The third approach, to which I adhere, holds that the physician will exercise the duty to warn the patient regarding the risk of family members carrying the defective gene, guide the patient regarding the significance of the warning, and ensure that information reaches family members in cases where it is critical to their health or preserving their lives (for instance, in cases where the probability of family members carrying the gene is high or when the consequent to the disease or condition the family members’ lifestyle is anticipated to significantly change).

To conclude, the legal duty to warn family members should be imposed on both the patient and the physician. In the case of physicians, the default rule should be preservation of professional confidentiality; however, under some circumstances, the physician would be obligated to warn family members at risk.

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